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food

When the going gets tough, I go grocery shopping. Too often. Usually my list has about 4 things on it, virtually the same every time: grapefruit juice, yogurt, pizza crust, vegan cheese. We always need those, but I always end up getting other things I think we need: paper towels, seltzer, dishwashing liquid, ice cream. Then I get home and realize that I’m only prepared for my husband’s breakfast and my son’s dinner.

That’s a problem.

So then, if I can pull it together, I think of one possible meal that will feed all of us – spaghetti, pork roast, steak, chicken. Then I need to decide which store will have what I want (I visit, on average, 5 different stores every week, three of them more than once) and spend an inordinate amount of time reading news and playing candy crush while I decide what time is best for me to make another store trip. I seldom leave the house specifically to grocery shop – tacking it onto another errand gives the illusion of efficiency when it is anything but.

It’s not always this way. There are weeks when I plan and shop for meals 4 or 5 days in advance. Part of it is seasonal – it’s easier to keep on hand and grill many foods that will suit everyone. At one point I got a farm share and was marginally successful at using up even the unusual foods that appeared in my weekly box (full disclosure: I nixed the kale).

I really can do this #threepizzas

I can’t blame the special diets because I’ve been doing them for so long I’m used to making 2 or 3 separate meals to meet all the criteria. If everyone is home and we all have pizza, I assemble three kinds: gluten-dairy-soy free, gluten-free with cheese, and wheat pizza with cheese.

So somewhere in my brain resides the capacity the plan, shop and cook meals without multiple random disorganized shopping trips. That part of my brain is just not operational at this time. In the early years after diagnosis (but before special diets) I think we subsisted entirely on hamburgers, spaghetti, roast chicken and grilled cheese. I don’t remember eating anything else (except that one Saint Patrick’s Day when I made corned beef and cabbage and key lime pie, which might have been the worst menu ever).

Years ago, a friend’s father was diagnosed with cancer and her mother spoke of standing in the market, unable to choose anything. At the time (I was SO young) I thought, “How hard can it be?” The answer is: really hard. My mind is occupied with other things and unless I haven’t eaten for two days (okay that never happened – more like 18 hours) food just isn’t a priority. It should be noted, however, that this doesn’t stop me from eating everything in sight in the process of not caring about food.

So the transition has hijacked the food organization section of my brain (along with other sections that have been hijacked by cable news, but I digress), replacing it with elaborate schemes to convince my husband that Chinese food from a place 45 minutes away is a really good idea. Except it’s not because he and I are the only ones who crave dried chicken with chilies and apparently we need to feed our children, too. For the record, they are all old enough to fend for themselves, but I kind of have a thing about feeding everybody in my house, whether they live here or not.

I’ll be glad when spring comes and the transition ceases looming and starts being. The uncertainty about what exactly will not go right – because it can’t be perfect – will be replaced by real successes to be enjoyed and real problems to be solved. I am overwhelmed by not knowing if what we have planned is indeed what we should have planned. Did we make the right choices? Talk to the right people? Ask the right questions? File the right paperwork? Are these the right services? Will we lose funding? How can we possibly thank everyone who helped us over the last 18 years? Who will stay in our lives? Who will leave? Will his feelings be hurt? Will he find new friends? Will we? Should we? Are we too isolated? Once I let one question in, all of the others come galloping in behind it, and most of them have no answers other than to wait and see. I hate that.

In the meantime, I have to go and sort through the groceries I bought and see if there is any dinner in there. Chocolate chips and parsley, anyone?

I took this photo in the parking lot of the Lurie Center in Lexington, Massachusetts, a branch of Massachusetts General Hospital that serves children and adults on the Autism Spectrum. These are iconic fries, a not-so-secret symbol of what it often takes to get an ASD kid to and through a doctor’s appointment; I can only imagine the tears spilled when they hit the pavement. The clinicians at the Lurie Center are among the best in the world and yet even the skilled and gentle support they offer can’t always extend out into the parking lot where worried parents and anxious kids struggle – sometimes mightily – to fit yet another specialist appointment into their lives.

But with this photo I see and offer up hope that persistence pays off. Not always, not when we want it to, but it is hard for me to adequately convey my joy at seeing these fries and knowing that they were not going to cause me the meltdown we once might have had just seeing them ice cold on the ground. My boy looked at them and remarked, “Someone’s been to McDonald’s!” and then danced – literally, with iPod – toward the entrance. Next to the door there is a wisely placed trash can, which he glanced into and noted, a little somber now, “There’s the box.” Some part of him knew and felt the pain of the child whose fries had met the wrong fate.

It was a lively day in the waiting room, with several families with antsy children waiting to be greeted by doctors and therapists. We recognized one clinician as she came out to greet a child. We knew her from work we did as part of a research group a few years ago, and she delighted at seeing our boy. He spoke politely with her and then began to tease me about what he wanted from me in exchange for being brave about having his blood drawn (more research – that’s another post – and the covet du jour was yet another Scooby Doo movie) that day. I saw her look at him, and at me and as she listened to us negotiate I saw on her face a measure of disbelief that this could be the same boy she knew in 2009. She looked at me and lowered her voice and said, “Do you know how lucky you are?” And even though I said yes, later I had to stop and take stock of how far we have come from our french fries in the parking lot days. Our challenging times are by no means gone but they are different, and it is best not to dwell on what they are like now – they will return soon enough.

And so begins another week, boyless.We are holding his place for him even as we try to take advantage of being able to do things that it doesn’t make sense to do when he’s home. You never know what you are going to miss, that’s for sure, and you never know what small temporary joys will pop up – like being able to leave a bowl of apples and peaches on the table. Other items are scattered around the kitchen that aren’t typically in plain sight – bananas, french rolls, hot dog buns, home made chocolate chip cookies. He loves them but should not eat them – they cause physically mild but emotionally distressing reactions – but if they are within reach he cannot consistently resist the temptation (kind of like me and chocolate). It almost seems disrespectful to have them laying around; like an open bar to an alcoholic. It’s not that big a deal but it is nice to have the food where I can see it – how many rotten apples, black bananas and moldy breads have I found in drawers, closets and cabinets over the years? I hide the food better from myself than from him much of the time. Often I just don’t buy what he shouldn’t eat but when others in the family request it I think it is important to respect their preferences, too.

The place holding is literal as well as figurative – his seat at the table is marked by two ceramic hearts he made last spring, professing his love of art and of us. I can’t predict how much he will have changed when he gets home, but I am certain that I will be different having gone so long without him. The hearts will prevail, though, that I know.

We are down to a skeleton crew of three, with Dad traveling and boy at camp. Dinner is never this simple when there are gluten-free folks in the house. We ran summer evening errands at the end of a golden day and picked up pizza on the way home, which is more of a treat for us than it is for some – and we like it that way.

Time, now, to park in front of the computer and wait for daily photos posted by camp.